Jake’s Story

13 years. It’s hard to imagine that I’ve been living with epilepsy for 13 years. I remember the events surrounding my first seizure like it was yesterday. I was at swim practice after school. We were in the pool doing our normal workout, and the coach (thankfully) called a team meeting in the bleachers. I don’t remember what we were talking about or, why we had a team meeting midway through practice; but I’m thankful every day that we had that meeting. Shortly after it got started, I had my first grand mal seizure. I came back to consciousness a little later and I was laid out on the ground on the backboard…and then I passed out again. I came back a few minutes later and I was being hauled out of the building into the cold February air and into an ambulance. And wouldn’t you know it I lost consciousness again. When I woke up for the last time, I was in the Northfield hospital and I had no idea what happened. The doctor said I had had a seizure and I didn’t know what to think. The doctors said it might be a one-off situation and it might never happen again. I could’ve been tired, dehydrated, stressed, a million different reasons it might have happened. I went on living life and thanked all of the lifeguards and everyone on the swim team who had sprung into action after my seizure started.

Fast forward to June of the same year. We were coming home from Bemidji…and I felt off the whole ride. I just thought I was getting sick or carsick or something. I’d later realize I was experiencing an aura. That night after we got home, I experienced my second seizure…again a grand mal. I learned afterwards that it was one of the scariest things my parents and brother had ever experienced. Again, the passing out and ambulance ride and sheer confusion followed. It was recommended that I visit with a neurologist.

Enter Minnesota Epilepsy Group. I remember my first EEG…I hated it. And I hated my second too. But I also remember meeting Dr. Jason Doescher, I was impressed by how congenial he was. How he could take all these hard to understand concepts and help explain them to a scared 15-year-old. And how he could tell me that everything will be okay. I had epilepsy…and that came with a lot of rules and restrictions, but it was okay. For someone who was learning how to drive, it didn’t seem okay when I learned I couldn’t do that for a while; for someone who loved being on the swim team, it was hard to hear that swimming was probably the most dangerous sport I could compete in; for someone who was on the football team, but secretly hoped this would be my ticket off the football team, it was hard to hear that football was probably the safest sport I could compete in…but Dr. Doescher made it all okay. And we went a few years, and everything was okay.

A few years later, we’d try to take me off my meds…and it didn’t work, so there goes the driver’s license…my senior year of high school no less…but I got right back on the meds and everything was okay. But as I got older, I didn’t need a pediatric neurologist anymore…it was time to start seeing an adult neurologist. I had to say goodbye to Dr. Doescher, who helped get me through the first three years of this journey. But he was certain I’d get along with Dr. James White. And get along we have! Except for the yearly requests to get my blood drawn…but we’re working on that!

College was hard for me; I’m not going to lie. While it seemed like everyone else was out partying, I was afraid to do that due to the complications that might arise. I was fortunate to find a few friends who weren’t into that scene and were cool about my epilepsy. And it turns out when you can explain your situation to people, you know what, they aren’t going to pressure you into drinking like a fish, so by Junior year, I had a lot more friends at school than I ever thought I would.

And now at 28 years old, I consider myself fortunate. My epilepsy was under control with the first medication we tried. I haven’t had a seizure in 13 years. I haven’t had a close call in 10. I graduated college and made tons of friends. I got a great job at a great company. I bought a house. I’ve been able to fulfil one of my lifelong dreams of being on the school board. I met a girl I love. Epilepsy has gone from something that scared me to something I’ve learned to live with. I’ve been lucky. I see so many people out there who aren’t so lucky. They struggle finding the right meds to control their seizures…or they can’t ever control their seizures. I pray that someday everyone with epilepsy will find the right meds or some solution to their problem. I pray that those in our community won’t live in fear of another seizure. I pray that everyone can be as lucky as I have been. I’m thankful for Dr. Doescher and Dr. White, for all the nurses and technicians, and staff at Minnesota Epilepsy Group. I know I don’t speak on behalf of all your patients, but the work you all do is amazing, and you’re always there to help us out.

1 Response to “Jake’s Story”

Thank you so much for sharing this, Jake! As the mother of a 12 year old boy with epilepsy (also very well controlled, we are so lucky) I can’t tell you how reassuring it is to read the story of someone who grew up with epilepsy and is just out there living his life. Best wishes, Joanna